Family Stress in Parenting a Child or Adolescent with FASD
The impact of a child or adolescent with fetal alcohol spectrum
disorder (FASD) on a family is multifaceted. The stress of care
can be described in four broad categories:
- The physical health of the child/adolescent.
- The mental health of the child/adolescent.
- The financial stress of care giving on the family.
- The emotional stress of care giving on the family.
The physical health of the child/adolescent with FASD
Prenatal alcohol exposure may cause alcohol related birth defects
(ARBD), which include kidney, liver, cardiac, and feeding problems
and a range of birth defects such as eye defects and cleft lip/palate.
These physical problems require medical care themselves but may
also complicate the child’s response to medication, e.g.,
the risk of cardiac, liver, or kidney toxicity.
Therefore, the involvement of a primary physician or pediatric
specialist, familiar with FASD medical problems, is an essential
part of the clinical management team.
The mental health of the child/adolescent
These children and adolescents show complex mental health problems
with overlapping diagnoses. Our diagnostic system, the DSM IV, is
based on criteria, and children and adolescents with FASD may meet
the criteria for a number of diagnoses.
The mental health problems are a mixture of organic brain dysfunction
and a psychiatric disorder with the developmental disability collectively
being called a dual diagnosis. Thus, it is not unusual to see features
of ADHD with co-morbid anxiety or mood features in a child with
FASD, as well as developmental delays in areas such as gross or
fine motor, language, intellectual and social functioning. This
is the essence of their neuropsychiatry disorder.
An adolescent may offer features of a triple diagnosis with a
combination of developmental disability, psychiatric disorder, and
addictive disorder. In this case, he or she may present with a mixture
of affective instability, intermittent explosive disorder, combined
with a developmental delay and a substance abuse disorder. The limitations
of the DSM IV diagnostic system prevent us from distinguishing those
with FASD who may have one core problem, organic brain dysfunction,
from those who have inherited traits that can be expressed as the
independent diagnoses of ADHD, depression, bipolar and anxiety disorder.
Because of this limitation, adolescents with FASD who manifest symptoms
that are consistent with many other psychiatric disorders are diagnosed
with "personality change secondary to prenatal alcohol exposure.”
In fact, sometimes the clinical presentation is a mixture of inherited
and prenatal alcohol acquired psychiatric disorders.
The use of medication in patients with FASD is a further complication
because of the potential atypical response of an alcohol-damaged
developing brain to any psychotropic agent. If the symptoms are
all related to the core problem of brain damage, responses to stimulants
for ADHD, antidepressants, or mood stabilizers may be marginal.
Others may have a better response to psychiatric medications if
they truly have a dual diagnosis.
The optimal approach is to have a mental health professional who
can consult with a child/adolescent psychiatrist. Also, a multi-disciplinary
educational team, including a language specialist, should be available
to address the developmental disability component of the disorder.
It is worth acknowledging that an appropriate mental health, language,
or school intervention can have a marked positive effect on a child
or adolescent with FASD.
The financial stress of care giving on the family
Financial stress is often not discussed directly, but may become
overwhelming Family stress. The constant balance of need and resources
(fiscal or human) is an ever present part of the management of these
complicated children and adolescents with FASD.
A post-adoption financial agreement is an essential part of care
planning for the adoptive parent. If the child remains with his/her
birth parents, they also need financial support for care giving.
These children or adolescents impact many different systems throughout
their life span. Each system involvement has financial implications
for long-term care. The systems that can become involved include:
- Health care system
- Mental health system
- Education system
- Child welfare system
- Vocational /rehabilitation system
- Disability system
- Chemical dependency system
- Criminal justice system
An example from Washington State is given below to highlight the
financial problems associated with adopting a previous foster child.
Before July 1996 when a foster parent adopted a child with special
needs (such as a child with FASD), the adoption subsidy was limited
to continued Medicaid, psychiatric benefits if pre-approved for
the future, and a monthly stipend amount capped by the legislature
that was equivalent to about 90 percent of the basic foster care
In foster care, the foster mother received the following amount
for a child with FAS (Julie Gelo, personal report):
- Basic rate ........$296 /month
- Special rate ......$141 .50 /month
- Exceptional ......$300 /month
- Respite care ......16 hours /month
- Day care ........$140 paid/month
- Mileage .........31 cents /mile
The total reimbursement for this female child with FAS was $1270
per month, but when the child was adopted this monthly amount changed
to $285 per month. This was a monthly decrease of 77.6 percent.
This obviously is a huge financial penalty for wanting to adopt
any special needs child with FASD.
The common problem appears to be one of “emotional entrapment.”
So the adoptive parents inherit a marked financial burden for fear
of losing a child to whom they have become attached. Theoretically,
Washington State (and other U.S. states and Canadian provinces)
want adoptive parents to have the same lifestyle as they did as
foster parents, but the immediate financial burden of changing status
from foster to adoptive parent has a marked and significant impact.
It is, therefore, important to establish a clear working relationship
with a local social worker involved with children with special needs.
This relationship will help to clarify financial impact of such
a child or adolescent in the home and also acknowledge the ongoing
role of post-adoption funding. It will, as well, create avenues
of extra funding for birth or foster parents, which are needed for
management issues such as transportation to a medical specialist
or respite care support.
The emotional stress of care giving on the family
This emotional stress is one of the unspoken problems in taking
care of a child or adolescent with FASD. The demands of nurturing
are constant and ever changing.
The parents can develop what is called “compassion fatigue.”
This was initially described in mental health therapists and has
its origins in the term “burnout.” However, the description
of compassion fatigue seems to have direct applicability for parents
of a child or adolescent with FASD and special needs. The initial
symptoms may be mild, such as headaches or backaches, but gradually
more severe symptoms occur which can progress to severe depression
and can precipitate marital discord.
Compassion fatigue in parents is often exacerbated by mental health
professionals’ reactions to the complex needs of a child with
FASD. The hopelessness and helplessness the medical community sometimes
shows often disconnects and invalidates the parent’s need
to have the problems of the child understood. Blame becomes an unfortunate
common issue. This shows itself in different ways, but one of the
most destructive ways is a perception that the parent is over responsive
and is seeking to have his/her emotional needs met through the child
or adolescent. Pejorative comments by the mental health professionals
about the parents making up problems can sometimes lead to blaming
the parents, even to the extent of suggesting Munchausen’s
syndrome by proxy.
Also, the family unit is challenged by the acceptance of a child
with FASD, so they sometimes need to grieve the loss of an “idealized”
family. The stages of grief from Kubler-Ross are useful in therapy.
Denial, anger, despair, bargaining, and acceptance are often seen
in families, and family members often fall on different levels of
this grief continuum. It is useful for them to clarify where they
are on the continuum towards acceptance.
The complexity of mental health and physical needs of a child
with FASD are ever present, and the parent is often the one person
who fully understands their complexity. The pediatric or psychiatric
specialists often see particular parts of the child’s problems,
but not necessarily the totality. So it is essential that regular
case management meetings, which include parents and medical specialists/mental
health therapists, be held to clarify the current level of the child’s
disability and the impact of therapy. This pragmatic approach commonly
protects and validates the parents as they perceive subtle but significant
changes in their children’s medical and mental health progress.
Knowledge of compassion fatigue acts as a protective factor against
its occurrence when parents and professionals are sensitive to its
Taking a holistic approach
The holistic approach to treatment for the caregiver clearly shows
the potential for decreasing the compassion fatigue or emotional
stress in the parent by helping to maintain the parent/child bond.
This approach also serves as a way to break the cycle of abuse
and alcoholism so intimately intertwined with each case of FASD.
The tragedy of trans-generational repetition of alcohol/substance
abuse is a legacy of FASD. Only a therapeutic approach which involves
many systems, empowering the parent/child or parent/adolescent bond,
can really loosen this compulsion to repeat and to continue the
It is essential to understand the stress of care giving and its
emotional risk to the parents who often have many roles such as
mother, father, advocate, teacher, and therapist. It is important
for the mental health professional to support and validate these
roles especially nurturing the parent/child bond. Compassion fatigue
is very real and sometimes subtle.
Respite care is essential to allow the family to have time to
nurture themselves. Ideally, it should be only with trained caregivers
and at reasonably frequent intervals, e.g., two to four weeks. Respite
care should be regularly planned, as seen in some cultural communities,
such as Native American, where the child goes to an aunt or uncle.
This offers fewer transition problems for the child. In other
cultures, it may be less disruptive to have a respite care worker
come into the urban home, thus letting the parent leave for some
relaxation time. Parents should negotiate to keep respite care time
even if a teenager with FASD has become involved with a youth worker.
Families raising alcohol-affected children or other chronically
disabled children must contend with the exhaustion of the care taking
role. It is essential to plan ahead for financial needs, respite
care, and psychological or mental health services. Taking time for
themselves individually and as a family is a necessity. The details
of their families may differ, but the theme of complexity is a common
thread that runs through all their lives.
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Poem: Ich sitze und sehe zu (I Sit and Watch)
Ich sitze und sehe zu
Ich sitze und sehe zu, wie meine 14-jährige
Tochter ihre Matheaufgaben macht, mein Herz zerbricht weil sie nicht
4 von 5 abziehen kann, ohne die Finger zu benutzen.
Ich sitze und sehe zu, wie sie ihre Hausaufgaben liest
und merke, dass sie liest wie ein 8-jährige.
Ich sitze und sehe zu, wie sie ihre Haut vom Fuß
abpult, und weiß, dass sie nicht mal humpeln wird mit dieser
Ich sitze und sehe zu, wie sie wie ein Nichtschwimmer
im tiefen Wasser reagiert, wenn sie mit Mädchen im gleichen
Ich sitze und sehe zu, wie sie auf mich zukommt,
Kopf nach unten, so dass keiner ihr FAS-Gesicht sehen kann.
Ich sitze und sehe zu, wie sie ihre Arme über
ihren Brustkorb hält,
um die fraulichen Merkmale an einem Körper zu verstecken,
der nicht im Einklang mit ihrem Gehirn ist.
Ich sitze und sehe zu, wie sie da alleine steht,
und zuschaut, während andere Kinder Spaß haben.
Ich sitze und sehe zu, wie sie einen Springparcours
wo ältere Mädchen die kein FASD haben, ausgeschieden sind.
Ich sitze da und sehe zu, wie sie den 11. Platz bekommt
von 50 Teilnehmern,
und mein Herz ist fast am Platzen, da ich so stolz bin.
Ich sitze da und sehe, wie sie lächelt als eine Rosette an
ihr Pony gesteckt wird,
und ich möchte ganz laut schreien,
"das ist MEINE wunderbare Tochter!"
I Sit and Watch
I sit and watch.
I sit and watch my 14-year-old daughter
My heart breaks that she can’t take 4 from 5
without using her fingers.
I sit and watch her reading her homework,
and realize that she reads like an 8-year-old.
I sit and watch her pick the skin of off her feet,
and know she won’t limp with the pain
of her wounded foot.
I sit and watch her, like a swimmer
out of her depth,
when she’s confronted with girls her own age.
I sit and watch her come towards me,
so that no one will notice her FASD face.
I sit and watch her, arms crossed over her chest,
to hide the signs of womanhood on a body
out of sync with her brain.
I sit and watch her, standing alone,
watching other kids having fun.
And then ...
I sit and watch her complete a horse riding event,
where girls older and without FASD are
I sit and watch her get eleventh place from
almost fifty competitors,
and my heart swells with pride.
I sit and watch the smile on her face, as a rosette
is pinned on her pony,
and I want to shout out loud,
“THAT is MY wonderful daughter !”
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Grant Develops Free Computer Games and Songs to Help Children
Research with the National Institutes of Health developed simple
computerized games for children three years old and up to let them
practice recognizing these two types of dangers: a fire in the home
and street safety hazards like crossing at a crosswalk. Following
good teaching techniques, all games are divided into short parts,
such as first practicing getting out of a home with a fire, then
practicing what to do if there is smoke.
When it comes to personal safety issues, children with FAS are
often at higher risk from everyday dangers than are other children.
Their seeming lack of fear, combined with a short attention span
and hyperactivity, can make them vulnerable while also making it
more difficult to explain the abstract concepts of appropriate actions.
When a group of therapists, teachers, and educators asked parents
of children with special needs what their main safety concerns were
for their children, fire and street dangers were always mentioned.
The normal recommended teaching method for these use booklets to
explain the safety ideas. For children with FAS, repeated practice
with concrete examples and continual reinforcement are often necessary
to learn and retain skills.
The child is placed in the chosen scene and can move around the
virtual world freely with the use of a mouse or the four keyboard
directional keys. An animated character inside the virtual world
demonstrates the right actions, tracks the child’s motions,
and encourages or corrects with words like “good job”
or “try again.” If the child does an action that could
be dangerous, such as walking into a fire or stepping in front of
a car, the screen goes black, the danger is explained and the child
is placed back in a safe place and must restart play. Wrong actions
never lead to any positive reinforcement, and the only punishment
for wrong answers is restarting the play.
Once the child learns to do the action with guidance, he or she
can practice alone in the virtual scene and receive verbal prompts
and points on a reward screen score bar. Menus allow the caregiver
to customize play for the interest and abilities of the child.
A recent pilot study at Emory University, using the Fire Safety
game with children with FAS under eight years old, showed most children
were not only able to learn the correct responses in the virtual
world, but were then able to show the same actions in the real world.
The games are available free at www.do2learn.org
(click “Games” on the navigation bar at the top of the
page). Because children with FAS often benefit from several different
modalities when learning, songs with Flash animations to show each
safety step are also available on the Web site.
In addition, there are picture cards and coloring pages that can
be printed for reinforcement of the safety rules. The site contains
several thousand pages of printable material, including over 380
picture cards, and homework and organizational helpers, as well
as information on FAS.
This project is supported by Grant R43-AA13362-01from NIAAA, National
Institutes of Health.
If your children use this site, we encourage you to provide your
comments, feedback and suggestions to firstname.lastname@example.org.